Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data. Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.

中文翻译：

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了解家庭照顾者的需求以支持在家中患有晚期疾病的亲戚：葡萄牙农村的一项民族志研究。

家庭照顾者在支持患有晚期进行性疾病的亲戚在家中起着重要的作用。长期以来，了解家庭护理人员需求的研究很少，特别是在高收入人群之外。这项研究的目的是探讨家庭护理人员在家里照顾患有晚期疾病的亲戚的经历，以及他们对满足和未满足的护理需求的看法。人种学研究，包括观察和访谈。在葡萄牙北部的农村地区招募了一个有目的的样本，其中包括10个家庭护理人员和10个亲属。使用连续的参与者观察（n = 33）和深度访谈（n = 11）在2014年至16年之间收集了数据。主题内容分析用于分析数据。提出了五个总体主题：（1）提供独立性和预防并发症的护理；（2）感知的和（3）未知的护理人员需求；（4）照顾者的身心障碍；（5）平衡有限的时间。这些方面中的任何一个方面的不平衡都可能导致家庭看护人的能力和表现下降，并增加其亲属发生并发症的风险。但是，随着时间的推移，家庭照顾者逐渐接受了他们的角色。这些发现增强了对家庭看护者需求的理解，当专业人员和家庭看护者随着时间的推移以协作方式一起工作时，可以最佳地满足这些需求。患者及其家人应被视为平等的伴侣。在这种情况下，以家庭为中心的护理将增强护理实践，这项研究可以为护理培训和教育计划提供信息。